INTRODUCTION THREAD: People affected by Hep B

Introduction/Orientation
844

I do not know if I am doing this correctly. I’m trying to introduce myself and post about my circumstances. So, here goes:

HepBCommunity.org intro post

Hi Everyone. I’m very touched and grateful to Thomas Tu for founding this community and to everyone else here who keeps this forum alive. Thank you, all.

Please excuse the length of this introductory post. Like others, I stumbled upon this supportive forum serendipitously. I was seeking an understanding of my (56-year-old) chronic Hep B that I was given to believe was permanently dormant. Now I’m also trying to cope with and understand a cirrhosis diagnosis that I was only recently apprised of. I’m still in shock but not panicking (yet).

In the UK, c. 1968, I was infected with HBV and had an acute episode for about a week or so until jaundice and other symptoms cleared. The only treatment was convalescence; no follow up, advice or cautions.

I moved to Canada in 1975 and, c. 1990, was seen at my family clinic, by a (now retired) doctor, who ordered bloodwork that showed I was a chronic HBV carrier. There was no treatment, no referral to a specialist and apparently no cause for concern except to have my spouse tested (negative). Presumably, my ALT was normal (?) – there are no records readily available.

I do have records for 2008: ALT=30; MCH=34.1, Neuts=1.9. No follow up; and, 2012: ALT=36. Again, no follow up.

In April 2022, bloodwork ordered by the same family clinic (but different MD), again showed slightly abnormal RBC Indices: MCV=100, MCH=34.

In August 2022, I was hospitalised and diagnosed with bradyarrhythmia. Two separate blood panels were ordered and some results were pertinent to HBV:

  1. Erythrocytes=4.38, MCH=33.6, Albumin=41, Creatinine=51.

  2. MCV=99.1, MCH=33.5, Platelets=141, Creatinine=53.

In April 2023, the same MD at the same family clinic ordered more bloodwork:

RBC Indices: MCV=101, MCH=34, Platelets=152.

After asking him about the persistently abnormal RBC’s, he asked if there was a history of any liver issues. He was unaware of the HBV infection that the previous doctor had been monitoring, so ordered a liver panel, June 2023, and made a referral to an hepatologist. Bloodwork results as follows:

Hepatitis B DNA Viral Load 6.22E+1 IU/mL

Hepatitis B Surface Antigen: Reactive

Hepatitis B Core Total (IgG+IgM) Antibody: Reactive

Hepatitis B “e” Antigen: Non-reactive

Hepatitis B “e” Antibody: Reactive

Hepatitis C Antibody: Non-reactive

The hepatologist ordered more bloodwork in Oct 2023, plus an ultrasound in Nov 2023.

Quoted from her report: “Hemoglobin 157, WBC 5.6, PLT 160, INR 1.1, Bilirubin 7, Albumin 43, AST36, ALT29, ALP67, GGT18, AFP 3, Creatinine 71, EGFR 88, Glucose 5.0, Cholesterol 5.56, Triglyceride 2.53, HDL 1.47, LDL 3.0, Ferritin 238, Ceruloplasmin and Alpha-1antitrypsin levels-normal, Autoantibodies -negative, Quantitative immunoglobulins -normal TSH 2.25, Hepatitis A IgG antibody – positive”

The ultrasound summary is: Liver = 12.8 cm, heterogeneous echogenicity, mildly nodular capsule, no focal hepatic lesion. The pancreatic duct is mildly prominent measuring 0.3 cm, otherwise, normal appearance. Abdominal aorta: No aneurysmal dilatation. Gallbladder: Normal. The gallbladder wall = 0.2 cm. Common bile duct: The common bile duct = 0.6 cm, no dilatation. The right kidney = 9.1 cm with multiple parapelvic cysts. The left kidney measures 8.7 cm also with multiple parapelvic cysts. Spleen = 7.1 cm, no splenomegaly. OPINION: no focal hepatic lesion.

The Dec Fibroscan was performed at the hepatologists office. Paraphrasing her report: “19.4kPa=F4 early cirrhosis, CAP266dB/m=S2/3 in keeping with increased liver steatosis and suggestive of early cirrhosis. No other intra-abdominal pathology of note.”

She goes on to say, that she suspects that, in the past I may have had a prolonged period of liver inflammation that led to fibrosis, and that while there’s no evidence of ongoing inflammation, guidelines for patients with cirrhosis suggest an antiviral (Tenofovir 300mg o.d.) to decrease the risk of HCC

This is all brand new to me and somewhat confusing! Even more so because I’ve been reading papers and abstracts since December that, at one moment give me hope, and the next, dash it. I’m hoping that forum members can help me understand the results above.

While I’ll be 75 next month, from what I’ve read, I recognise I shouldn’t be lulled into complacency based on the lack of detectable symptoms for 56 years. I’m very concerned to learn of my cirrhosis and wonder if it is an inevitable progressive process, or if the hepatologist is correct about it having happened some time ago given the lack of ongoing inflammation at present. That is, can the scarring process just cease on its own?

Also, some assert that the liver can regenerate but not once scar tissue eventually interferes. This may be very naïve but how can you tell the degree of scarring? Is this measurable somehow, and what is the significance of stable ALT/AST in all of this?

I have follow-up bloodwork and an ultrasound booked for May. I’m considering having another Fibroscan if I can find a provider. My thinking is to treat the first one as a baseline. I have no idea if the results of an additional scan in just six months could show either worsening, improvement or stasis.

I’m a bit trepidatious when it comes to medication. I’ve barely used any over the years and presently use none. From other reading, apparently Tenofovir (nor anything else) can make one completely virus-free. Is this true? How is its efficacy measured? Is it undetectable viral load plus well-functioning enzymes? How would that be distinguished from a chronic carrier who already has those? (Not that I do.)

After using an antiviral, do you produce HBV Ab? Why do you have to take the antiviral for life? Is an antiviral actually a kind of “virus suppressor”? What does DNA Viral Load 6.22E+1 IU/mL actually mean? With a low viral load does it mean an antiviral could be more effective?

So many questions. Thank you in advance for taking the time to read this and for any clarification.

845

Hi @karp,

Thanks for sharing your story and sorry about your confusion.

Yes, your hepatologist is correct. Liver damage from Hep B can happen in spurts over time and can cease on its own. However, it can also be controlled by antiviral medication to reduce any ongoing inflammation.

The past accumulated liver damage can be measured by fibroscan, which you have taken. Essentially, sound travels differently depending on how stiff your liver is. If there is scar tissue, your liver is stiffer. The fibroscan measures this and shows that your have cirrosis.

ALT/AST is a measure of current liver damage.

Antivirals like tenofovir stop the virus from producing more versions of itself. However, it doesn’t get rid of the forms of the virus in the liver that have already been established. So, you need to keep taking them to maintain suppression of the virus (measured by a reduction in viral load). It also reduces on-going liver damage and inflammation (measured by ALTs).

A viral load of 6.22e1 means for each mL of blood you have 62 units of virus (~300 copies) per mL of your blood, which is a very low level.

Hope this helps.
Thomas

1 Like
846

Thank you so much for taking the time to reduce some of my confusion. It will take some time for me to absorb the implications. I think I’m still in some kind of (hopefully, post-) shock. I may have more questions. You and your colleagues are doing such important work. Thank you again.

1 Like
847

Hi Martin, am glad to learn that we are both Ugandans. Am specially located in kiryandongo District and God’s grace shall one time make us surely meet one day.

848

Hi kinoti, can we chat privately or even exchange contacts if you don’t mind?

849

Hi @Opa,

Unfortunately, @kinoti has recently passed away: The recent passing of Kinoti

Thomas

850

My name is Sunday, my hepatitis is inherited from my parents and am now 31, please am I still vulnerable to liver damage?

851

Hello and welcome to the forum. I’m not an health expert and I’m sure they’ll welcome you too @ThomasTu @john.tavis @availlant .
Liver damage can occur when high enzymes and high viral load. Of course you have to check with your health care provider for ultrasound or fibroscan.
Best Gregory

852

Hi @Sundaykkt12,

Welcome to the forum and hope we can support you with your condition.

Regarding the hepatitis, if you are HBsAg-positive still then yes there is a risk of liver disease progression. It is important to maintain monitoring so you know what your condition is, as liver damage can occur without any symptoms.

Hope this helps,
Thomas

853

Thank you for the response, I will be checking my condition henceforth

1 Like
854

Hello! My name is Maria, I am from Russia, but since 2017 I have been living in Greece. I learned about the diagnosis two months ago, when I took tests for the IVF procedure. I never did drugs or got tattoos. I don’t drink, I don’t smoke. my lifestyle is more than correct. At the age of 8 I was vaccinated with three doses. in 2017 I took the test for a student visa. he was negative. After that, I only visited the dentist, where I had to have two implants installed. this was in 2022 and 2023. in fact, I visit him regularly) I have already passed some tests, hbeag is negative, the viral load is 2140 iu/ml. I’m trying to get out of depression, but I’m not doing well. An ultrasound showed that the liver was healthy. Thank you very much that there is this forum where you can share your experiences and be sure that you will be understood.

855

Welcome @Karp

Thank you for your sharing your story. I can understand you being shocked it would be a lot to have to understand and come to terms with. I have lived experience so no health experience.
Just wanting to understand .,is your ultrasound normal but the fibro scan cirrhosis ?
I’m sorry that you are going through this. You are hands on this forum. Have a read around you again lots of information that should be helpful.
Concerning the medication. I’ve been on it for years and have not had any side-effects and I counted as a blessing that there is medication.

2 Likes
856

Hi everyone!
My name is Kingsley and I am a Nigerian.
Am glad I found this community. This community give me more information and encouragement than I use to get from my doctor.
I was diagnosed of Chronic hepB in 2018. I was placed on Tenofovir and livolin. I continued using the drug till 2020 when I stopped using the drug due to financial challenges( no health insurance and no job because I was still a student).
Now I want to resume treatment again, my doctor said I shouldn’t have stopped treatment. However, she said I am going to start treatment afresh, she requested I do my viral load and liver function again. My ultrasound scan result showed that my liver is mildly enlarged while every other thing is normal. My viral load and liver function test results are not done yet.
Now, my concerns and fears are whether the liver is going to get better again once I resume treatment. She has not recommended any drug for me yet. She said until the viral load result is out and it takes a minimum of 2weeks here to obtain the result.
I also want to know if there is a foundation that help people living with hepB in getting drugs because I am not financially bouyant to continue to Carter for my drug( I am a recent graduate but not working yet. My family is also not bouyant)

I am always afraid of dying due to this infection and my fear spikes each time I hear that someone died and their death is connected to HepB virus

857

I love the fact that there is a lot of information here that brightens my mood each time I read through posts on this platform.
Before now, I used to think I am forever condemned by the reason of this HbV. But I do no longer feel so now… there isalot of hope. Thank you all for what you do here

858

Hi Caraline.

Thank you for your welcoming reply. This forum is truly supportive.

To answer your question, my liver ultrasound was not normal. The liver looked mildly bumpy on the outside, and the inside texture was uneven. The Fibroscan showed steatosis and early cirrhosis. Both results are very alarming because, like others, I had no idea this was occurring.

I’m reassured by your experience with the antiviral and it is still an option that I’m leaning towards. It might be my only option unless REP 2139 comes along first. Is your viral load now undetectable, and is your ALT normal?

At 75, I’m not sure if old age will get me first, before either the HBV or my heart condition! Until August 2022, when I was diagnosed with an incurable heart disease, I was very active and seemed very healthy, and now cirrhosis in 2023.

I’m trying to look on the bright side. My blood panel shows that HBeAg is non-reactive and HBeAb is reactive. I think that is a good sign but not sure. (Perhaps Thomas Tu, Andrew Vaillant or another expert will let me know.) My ALT looks ok and my viral load is low.

Thanks again, Caraline, and to all in this warm community.

859

@Karp I have been undetectable for years now. My viral load came down quite quickly.
All my bloods are good except low iron, which would have nothing to do with HBV.
I don’t know results of ultrasound till next week but doctor would have rang me, like he did about my iron, if there was a problem.
You must be beside yourself Karp. What a shock! Something we all dread.
Hoping @ThomasTu @availlant and others can guild you better.
They are medical professionals
When do you see the doctor again?
Keep in touch

1 Like
860

Dear @Karp,

So it appears you have had a fairly successful resolution of your acute HBV infection in the past and now have partial cure of HBV (more recently with normal ALT and HBV DNA < 2000 IU/mL in the absence of therapy in June 2023). Indeed your HBV DNA is quite low here at 62 IU/mL. Your HBV virology results are consistent with this (especially your HBeAg seroconversion). With partial cure in place, we rarely see progression of liver disease and oral antiviral therapy is not currently recommended in patients with partial cure.

Your November ultrasound describes unremarkable signs in a liver and kidneys of a older man and importantly no liver cancer and no signs of portal hypertension (no splenomegaly). ALT and liver function are still normal here, indicating the absence of liver inflammation.

The findings of this ultrasound appear to be at odds with the Fibroscan performed in the hepatologists office a month later (which hospital in Canada?) suggesting early cirrhosis. It is unusual for transition in liver status to occur so quickly and you have no liver biopsy results or more recent liver function results to clarify this confusion.

It is not clear to me that your chronic HBV infection (which your immune system appears to have got partially under control) is the cause for the recent finding of elevated liver stiffness. Taking oral antiviral therapy will not harm you, but with your latest HBV DNA of 62 IU/mL in June 2023 it is not clear if it will help.

Here are my suggestions which you should discuss with your doctor:

  1. Retest HBV DNA and HBsAg with a quantitative test platform as soon as possible.
  2. Test for HDV co-infection (HDV RNA). If you had an undiagnosed HDV co-infection, it might explain rapid changes in liver status with partial cure of HBV in place (however ALT should be elevated in this case).
  3. Retest ALT AST bilirubin albumin INR and platelets.
  4. Your liver stiffness might be due to very recent increases in fat deposits in your liver which could have nothing to do with your HBV infection. Additional imaging (MRI) and or liver biopsy might be indicated here to sort out the confusion.

@availlant

3 Likes
861

Welcome @Kingzy

Thank you for sharing your story and I’m sorry you are in financial stress.
The doctor is right about not stopping treatment. It’s very important not to stop
I hope your results will be fine and you will be able to start treatment again.
Not sure why you were one two medications, usually one tablet a day. Tenofovir , so you could save on medication by having to only take one a day.
Keep us informed There is a Nigerian information here on our site. Not sure where.
Maybe others could help.
@ThomasTu

1 Like
862

Hi Caraline.

Thanks for your reply. So glad your viral load is low and HBsAg undetectable. That’s very encouraging and speaks well of antivirals. You must be feeling great relief!

I think I will delay using an antiviral until I’m reasonably sure it is the right thing to do in my particular case. I’m hoping to book more testing, based on Andrew Vaillant’s suggestions, when I see my doctor at the end of the month.

Thanks again, Caraline.

863

Thank you so much for giving up your limited time to consider my medical history and for giving me your thoughtful and informed suggestions. You guys on this forum are amazing and so unbelievably helpful. Such a rare thing these days…

While it seemed prudent to delay a decision on antivirals until at least May, when I’d see the results of the next ultrasound and blood panel (required every six months by Public Health Ontario), I was very anxious about the chance of further damage over those six intervening months. My plan had been to find another clinic to repeat the Fibroscan and make a decision either to delay for a further six months or take the antiviral if things looked grim. My thoughts were that if it has taken 56 years to develop early cirrhosis – assuming a steady progression – then six months would be a reasonable gamble. There was also the faint hope that within that six months to a year, HBsAg would spontaneously disappear. All of this, so very stressful!

There is a pre-existing appointment with my GP, booked for 27 Feb, specifically to discuss my questions and concerns about the hepatologist’s report. Following your suggestions, I will petition my GP to, as soon as possible, re-do all the bloodwork including all your suggestions, especially the screening for HDV, and book an MRI. I will also ask him if there are any clinics in the Hamilton area who could repeat the Fibroscan since that could likely occur sooner than an MRI appointment. My December Fibroscan was performed by the hepatologist in a one-person liver clinic, not in any of the local hospitals. Because it’s more invasive, I’ll hold off on a request for a biopsy to assess all the other results first.

Again, I’m so thankful for your kindness.